Hashimotos and iron deficiency anaemia - Thyroid UK

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Hashimotos and iron deficiency anaemia

smwdorset profile image
18 Replies

I have just been diagnosed with severe IDA - had to have an emergency iron infusion on Wednesday to preclude a blood transfusion. Feeling still exhausted but dizziness and headache gone

Question is has anyone heard of an association between thyroid problems and iron deficiency ( which postdates the hemi- thyroidectomy that tipped my TSH and T4 into the abnormal zone ( previously subclinical)

The medics are struggling to find an underlying cause for my IDA - coeliac disease is ruled out and gastroscope and colonoscopy are both clear ( though they plan a wireless capsule endoscopy to check the small bowel in November )

One doctor hypothesised that my thyroiditis might have some connection?

Any leads would be welcome

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smwdorset
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18 Replies
greygoose profile image
greygoose

I'm always amazed that they never think to check stomach acid level. If you can't digest your food properly, your nutrient levels are bound to be low. And, if it goes on long enough, presumably you will become deficient. And, there is the link to hypothyroidism: hypos usually have low stomach acid.

smwdorset profile image
smwdorset in reply togreygoose

How interesting that hypothyroidism causes a drop in stomach acid ! Is there a reference to that?

but weirdly I must have had high levels of stomach acid until recently because I had gastritis and they did find and treat an h pylori infection Of course the lansoprezole that is part the triple therapy will have presumably reduced stomach acid and I have now finished the five week course of it . But In any case the drop in iron and Hg levels began before the H pylori was discovered

Really appreciate your reply thanks

Ps How do you check stomach acid if they decide to check levels now I have stopped the lansoprezole?

greygoose profile image
greygoose in reply tosmwdorset

Actually, I don't think it's true that H pylori is caused by high stomach acid. If the acid were high, it would kill the bacteria. It's low stomach acid that allows the bacteria to take hold. So, if you had low stomach acid, and started taking lansoprezole, your level would drop even further. But, it doesn't happen over-night. It takes time for the symptoms of hypo - like low stomach acid - to have effect.

Have a look at this article to see ways of checking stomach acid levels:

healthygut.com/articles/3-t...

Whenever there are stomach problems, doctors always assume high levels of acid are the cause, and never check levels - I don't think they even know it's possible to have low levels.

smwdorset profile image
smwdorset in reply togreygoose

Thanks so much for this - yes it was a mistake. What I meant was the lansoprazole made the low levels worse. But I had to take it with the antibiotics to kill the H pylori which was causing terrible gastritis. I will follow the link - one problem is that it doesn't seem very easy to check for low levels? (They didnt do it when they did the endoscopy). BTW this also seems to be associated with sjrogens syndrome which I have all the classic symptoms of. Have you come accross that before?

greygoose profile image
greygoose in reply tosmwdorset

No, I know nothing about sjrogens, I'm afraid.

smwdorset profile image
smwdorset in reply togreygoose

ps PS thanks for the link - I see the article recommends a way of home testing - I know that you cant post recommendations on the public forum. How do I ask a specific question of you for a private repsonse please?

greygoose profile image
greygoose in reply tosmwdorset

Recommendations for what? The things you can't post on here are discussions about named doctors, and sites where you can buy thyroid hormones. There's nothing else we can't talk about. :)

smwdorset profile image
smwdorset in reply togreygoose

Ah sorry I wasn’t sure - I meant recommendation for which home based test for low stomach acid - and what strength and dose of hcl with pepsin if that is a good one as there are so many different ones on amazon

I appreciate you may not know such a detail

Thanks

greygoose profile image
greygoose in reply tosmwdorset

No, I'm afraid I don't. I've never used one. Sorry. :)

humanbean profile image
humanbean

Has anyone checked your poo for blood? I had a clear endoscopy and flexible sigmoidoscopy even though the blood in my poo would have been visible to a blind bat. But clearly, I'm female, therefore I must be a liar and a hypochondriac, and nobody else actually bothered to look. The serial incompetence involved in finding the huge bleeding polyp I had was absolutely staggering.

Read this first before producing any poo samples if anyone does decide to check :

healthunlocked.com/thyroidu....

I could be out of date, but the capsules used in capsule endoscopy often run out of battery power before they even reach the bowel and so they stop taking pictures, so the cause of your problem could still be missed.

...

Having said all that, your gut and bowel may be fine, other than having too little stomach acid. It is a common effect of being hypothyroid. When that happens the body can't extract nutrients from food and we end up low in practically everything. I don't have time to discuss it all now, so search the forum for comments on low stomach acid and what to do about it. Don't forget to ask doctors for other nutrient levels to be tested as well as iron, and ask for the results including reference ranges. Since your iron is (or was) low it is almost certain that lots of other nutrient levels will be low too.

Look up info on achlorhydria and hypochlorhydria :

en.wikipedia.org/wiki/Achlo...

It mentions hypothyroidism as a cause on that link.

Unfortunately, if you look up Google Scholar or Pubmed for research papers on the combination (which is worth doing) you'll find that the vast majority of the research is old and modern doctors will just dismiss it. The symptoms of hypothyroidism are no longer taught to doctors, because they rely solely on blood tests.

smwdorset profile image
smwdorset in reply tohumanbean

How extraordinary that they missed a polyp in the colonoscopy !!!! I had a faecal occult test which Was negative bit I am now told that it is not v sensitive anyway and have just been asked ( after 10 months of symptoms ) to do a FIT test for blood in poo.

The capsule endoscopy is mainly to check the small bowel I think

No one has mentioned low stomach acid to me and not have I been tested for any other nutrient deficiency - the trouble is that gastro specialist don’t talk to thyroid specialists and vice versa

Am I right in thinking though that I am more likely to have had high stomach acid with an h pylori infection - at least until I was put on the lansoprezole?

Thanks for the pointers

mogs302 profile image
mogs302 in reply tohumanbean

Usually you can see red blood in your poo only if you are bleeding from hemrhoides, which are not dangerous. Otherwise blood in the stool is invisible or black, and the stool is tarry--like tar.

humanbean profile image
humanbean in reply tomogs302

Not 100% true.

There are many shades of red between the bright red you see with piles and the black you would see from a stomach bleed. The closer to the stomach any blood comes from the darker it will be when it is defecated out because it will have been digested a lot, or conversely, the nearer the rectum it comes from the brighter red it will be. And if the bleed is profuse enough it will be visible with the naked eye no matter what colour or texture it is. It may look like tar or even coffee grounds if it comes from very high up the gut or from the stomach. Someone with a bleeding polyp in the descending colon or the sigmoid colon could see blood that is maroon - neither bright red nor black.

I would agree that bright red blood is most likely from piles and isn't likely to be dangerous.

SlowDragon profile image
SlowDragonAdministrator

What are your most recent blood test results for TSH, FT3 and FT4

Have you had TPO and TG thyroid antibodies tested? If not they need testing

Hashimoto's (autoimmune thyroid disease) and H pylori can be linked

thyroidpharmacist.com/artic...

ncbi.nlm.nih.gov/pubmed/237...

As greygoose says.......majority of hypothyroid patients have low stomach acid.

Low vitamin D, folate, B12 and ferritin are extremely common

Important to regularly retest vitamin levels

Links about low stomach acid

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

scdlifestyle.com/2012/03/3-...

naturalendocrinesolutions.c...

Ppi and low vitamins

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

smwdorset profile image
smwdorset in reply toSlowDragon

Thanks - my most recent results didn’t include T3 only TSH and T4 so I have booked a medichecks test but can’t get to The blood clinic yet as I am still too weak really to get out of bed

My NHS thyroid results show a drop in TSH since my dose of thyroxine was doubled on 5 July to 50mcg and my T4 has gone back up to what it was two years ago before I had symptoms

The details are

TSH are 3.06 ( ref range 0.27 to 4.20 mU/L) down from 4.85 in May 2019. But it’s still higher than two years ago in December 2016 when it was 2.16- same ref range

T4 now up to 18.6 ( ref range 10.5- 24.5 Pm ol/L) from 16.7 in March 2019 and 17.6 in December 2016 ( but then my TSH was only 2.11)

Nb the December tests were part of the standard NHS well Woman screen when I turned 60 - I had no symptoms then. No antibody tests we’re done then either

My doctor did test for Hashimotos antibodies or at least he tested for the IGG(AB) ones in March and they were ‘normal’ - 12 - (ref range 0.00 to 50 kU/L)

But he says Hashimotos antibodies can sometimes test false negative and he prefers to believe the histology of the half thyroid removed in February which showed evidence of lymphocytic thyroiditis. He thinks the other half o still

Have would show the same.

That’s why in conjunction with the increased TSH he decide to treat me.

Haven’t had vitamin D tests but folate and B12 were ok on the medichecks test in May 2019

Am a bit concerned re possible low vitamin D which wasn’t tested before the IV iron infusion and my daughter ( a final year medical student ) says they should have tested this before giving me FCM infusion on Wednesday as more than 30 per cent of patients who have gastric symptoms ( which I do) experience severe hypophosphataemia with FCM; and after feeling better yesterday afternoon I have relapsed and have new symptoms -

Terrible joint pain and muscle weakness and even worse fatigue than before the infusion. She tells to Mention this in the follow up telephone appointment with the hospital Tomorrow morning .

I can’t believe I feel so bad still!

SlowDragon profile image
SlowDragonAdministrator in reply tosmwdorset

Standard starter dose is 50mcg Levothyroxine

If over 50 years old the starter dose is 25mcg

But all patients should have dose of Levothyroxine slowly increased

Bloods should be retested 6-8 weeks after each dose change

Dose increases in 25mcg steps upwards (sometimes has to be slower) This continues until TSH is under one and FT4 in top third of range and MOST IMPORTANTLY FT3 at least half way in range

All FOUR vitamins must be optimal

Easy postal vitamin D test by NHS

vitamindtest.org.uk

Vitamin D at least around 80nmol and around 100nmol may be better

Ferritin at least half way in range (usually a minimum of 70)

B12 at least 500

Folate at least over ten

TPO and TG thyroid antibodies need testing for Hashimoto's

IGG antibodies was not correct test

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

When did you start on 25mcg Levothyroxine?

Being left on grossly inadequate dose of 25mcg Levothyroxine for far too long is likely reason for low iron

If dose was increased to 50mcg Levothyroxine July 5th you need bloods retested and very likely ready for next dose increase to 75mcg

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

verywellhealth.com/best-tim...

Low iron and/or ferritin EXTREMELY common when hypothyroid

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

Links about iron and ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Jaydee1507 profile image
Jaydee1507Administrator

Gosh sorry you're suffering this and hope you've made further strides forward by now. Could i ask what your haemaglobin level was please? I lost alot of blood in an operation a month ago, ended up in the high dependency unit for 3 nights and they didn't transfuse me or give me iron. Really can't believe they expect me to eat my way back to health? My GP is rechecking various bloods on Friday as I'm miserably lifeless and unwell. When I left hospital my haemaglobin was 102.

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